Abstract
Background: Inhaled medications for cystic fibrosis (CF) are effective but adherence is low. Clinicians find it difficult to estimate how much treatment people with CF (PWCF) take, whilst objective adherence measurement demonstrates that patients are poorly calibrated with a tendency to over-estimate actual adherence. The diagnostic approach to a PWCF with deteriorating clinical status and very low adherence is likely to be different to the approach to a deteriorating patient with optimal adherence. Access to objective adherence data in routine consultations could help to overcome diagnostic challenges for clinicians and people with CF. Attitudes of clinicians to the use and importance of routinely available adherence data is unknown. Methods: We conducted an online questionnaire survey with UK CF centres. We asked five questions relating to the current use and perception of objective measurements of adherence in routine care. Results: A total of eight CF centres completed the questionnaire. Few of the responding centres have adherence data readily available in routine clinics (13% of centres use medicines possession ratio; of centres with access to I-nebs® it was estimated that 17% of patients had I-neb data regularly available in clinics). All centres considered the availability of objectively measured adherence data to be important. Respondents identified that systems developed to provide adherence data in clinical practice must provide data to both clinicians and patients that is readily understood and easy to use. Conclusions: Centres perceived the availability of adherence data in routine care to be important but objective measures of adherence is rarely available at present.
Highlights
Cystic Fibrosis (CF) is a multi-system life-limiting genetic condition in which the most common cause of death is respiratory failure
Low adherence to CF medications is associated with poorer health outcomes[3], yet real-world adherence to inhaled medications is only 35–50%4,5
The ‘invisibility’ of adherence in routine care can result in consultations characterised by the ‘lamp post syndrome’[6], whereby there is a tendency for clinicians to use readily available information which can be misleading
Summary
Cystic Fibrosis (CF) is a multi-system life-limiting genetic condition in which the most common cause of death is respiratory failure. Low adherence to CF medications is associated with poorer health outcomes[3], yet real-world adherence to inhaled medications is only 35–50%4,5 Another problem is the potential for diagnostic uncertainties – in a study where the objectively measured adherence was 36%, people with CF reported median adherence of 80% whilst clinicians estimated adherence rate of 55–60%5. This disparity makes it challenging for healthcare professionals to make informed clinical decisions. Since neither patient self-report nor clinician estimation provides an accurate indication of medication adherence, adherence will be invisible in those centres without systems that make objectively measured adherence visible This lack of adherence data is critical for diagnosis and assessment. CF are effective but adherence is low Clinicians find it difficult to estimate how much treatment people with CF PWCF take whilst objective adherence measurement demonstrates that patients are poorly calibrated with a tendency to over estimate actual adherence The diagnostic approach to a PWCF with deteriorating clinical status and very low adherence is likely to be different to the approach to a deteriorating patient with optimal adherence Access to objective adherence data in routine consultations could help to overcome diagnostic challenges for clinicians and people with CF Attitudes of clinicians to the use and importance of routinely available adherence data is unknown
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